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AMRF

From Patient to Medical Researcher: Understanding Standing in POTS

Updated: 2 days ago

"Five years ago, I got sick with a virus and never fully recovered. I went from being a competitive swimmer, training over 12 hours a week, to struggling just to walk up the stairs as my heart rate would skyrocket."

 

Thanks to Greer Pugh for sharing her story.

 

Young woman posing in front of a mountain lake.
Greer Pugh, AMRF Doctoral Scholar

For two years, my symptoms were dismissed as anxiety or hyperventilation, which I came to learn is unfortunately all too common for people in my situation. It wasn’t until I moved from Wellington to Auckland for university that I was finally heard and received a diagnosis and proper management for POTS, Postural Orthostatic Tachycardia Syndrome.

 

POTS is a debilitating condition where the autonomic nervous system doesn’t adjust well to standing, leading to a significant increase in heart rate (>30 bpm). Patients often report a constellation of multisystemic symptoms including chronic fatigue, fast heart rate, dizziness, headaches, fainting and more. POTS disproportionally effects younger females aged 13-50 with 14 years being the most common age of onset.

 

Throughout my personal journey with POTS, and through my work with patient communities, I have seen firsthand how devastating this condition can be. POTS disrupts every aspect of life—education, employment, social activities, and overall quality of life.

 

Receiving a 2024 AMRF Doctoral Scholarship for my project ‘Understanding standing in POTS’ means much more than solely advancing my career—it gives me the opportunity to make a real difference in the lives of those affected by POTS.

 

POTS patients often endure long diagnostic delays, misunderstanding and are left not being heard.

To anyone struggling with POTS - although the journey is often long, unpredictable, isolating, and filled with misunderstanding, I want you to know that you are not alone.

We know that quality of life is poor in POTS, but its causes are not well understood. The mechanisms behind POTS likely vary among patients, so they need personalised treatment but our limited understanding of the mechanisms challenges symptom management.

 

For instance, excessive blood pooling in the legs is a common issue in POTS and we think may be linked to abnormal blood vessel structure, function, or regulation. To address this, we will non-invasively measure artery and vein stiffness and function in patients with POTS and healthy controls. Then, we will assess the regulation of the blood vessels by the ‘sympathetic’ nervous system because this has been neglected in POTS.

Finally, we will investigate whether quickly drinking a certain amount of water improves symptoms of POTS whilst standing. Understanding the blood vessel differences in POTS will help us find personalised treatment options for patients to help improve symptom management and quality of life.

 

To maximise the impact of my research study and value of this doctoral scholarship, my team and I will work closely with researchers, medical professionals, and patient communities. Findings from the study will be published in high-impact peer-reviewed journals and presented at national and international conferences.

 

Our collaboration with patient advocacy groups and POTS specialists will enable direct communication with patient communities and healthcare professionals, enhancing POTS education and awareness in New Zealand.

 

Given the lack of education on POTS in New Zealand medical schools, there is an opportunity to educate medical students in preclinical training through lectures and case studies on the basic mechanisms and clinical management of POTS. This education is crucial for raising awareness of POTS in New Zealand, reducing the burden on limited specialists, reducing diagnostic delays and improving patients' quality of life. 

 

While this is my team's first time venturing into POTS research, they are globally recognised for their contributions to human cardiovascular physiology and exercise science. Their expertise in advanced human physiology measurements, combined with my personal experience and insight into the complexities of POTS, positions us uniquely to advance our understanding in this area.

 

Moreover, my team has established international connections with leading human physiologists and POTS experts who can assist us as we navigate this new area of research in New Zealand. Together, we are establishing a research foundation of POTS research in New Zealand that investigates the physiological mechanisms of POTS and bridges scientific curiosity with patient-centred perspectives.

 

Now I am beyond grateful to have my POTS well managed and be in a unique position as a patient-researcher, where I can bridge the gap between the patient and scientific communities. I understand the complexities of POTS from both perspectives—living with the condition and exploring pathophysiological mechanisms scientifically.

 

This dual insight allows me to translate complex research into accessible patient information, empowering them to understand their health better. At the same time, I bring the lived experiences of patients back to the scientific community, ensuring that research is focused on addressing practical challenges and delivering meaningful outcomes.

 

This funding from AMRF allows me to complete my PhD in Auckland and achieve my goals of better understanding and much needed awareness of POTS to New Zealand, where we can begin to give POTS patients a voice.

 

Together we will help bring more understanding to standing in POTS – one step at a time.

 

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